CHENNAI, India – A child born here last month with one eye and severe brain damage has died, leaving unanswered how doctors came to suspect the infant’s mother may have been exposed to an experimental cancer drug known to cause the defect. The child was never given a name and was listed in the hospital's register as "baby of Gomathi." She died in the first week of September of complications arising from her condition, known as cyclopia, having survived longer than any other known similar case. Wired News first reported on the child's condition in August. Cyclopia is a rare defect that affects about one child in a million. The child's brain had been fused into a single hemisphere; she had no nose and only a single eye socket in the center of her forehead. An internal hospital report seen by Wired News stated that there were only two potential causes: Either it was the result of an undetected chromosomal disorder or the child's mother had been exposed to cyclopamine, an experimental drug being researched by several U.S. pharmaceutical companies as a potential treatment for cancer. Cyclopamine is available through several drug suppliers in the United States and Canada. Hospital authorities at Kasturba Gandhi Hospital for Women and Children stated that the mother had sought an unknown treatment from a local fertility clinic that may have caused the condition. Yet hospital authorities remain tight-lipped about the child's medical history and have refused several attempts by multiple press agencies to locate the fertility clinic or interview the mother. An attending nurse said that the mother "must have taken some tablets" to cause the condition. Before going to the clinic the mother had been childless for six years. Despite several weeks of inquiry there have been few developments in the investigation to uncover more information about the cause of the condition. Hospital authorities have refused a request for the child's birth and death certificates and efforts to locate the mother have been unsuccessful. Hospital superintendent Dr. S. Dhanalakshmi said doctors did not collect information about the fertility clinic or medication the mother had been using. She defended the oversight in the medical report by stating the pediatrician was uncomfortable asking for medical information because the mother had already been "traumatized enough." The mother remained at the hospital for at least three days after delivery. With the child dead, and no obvious way to identify the mother, this reporter asked the blogging community for help moving the investigation forward while at BlogCamp in Chennai. Anyone interested in the case is encouraged to pursue the yet untested Right to Information Act, the Indian equivalent of the Freedom of Information Act, to locate the child's birth and death certificate and other documentation associated with the case. Bloggers may also be able to find other leads by contacting people in Chennai who know the mother's identity or have information about clinical trials in South Asia. In the last week, bloggers have been communicating about the investigation through e-mail, on individual blogs and on this reporter's website. Beginning this week, Wired News will join the investigation, soliciting tips and posting updates on its Body Hack blog. Source
